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Her life is slipping away as I compose this forum topic. Both her daughters, my daughters, have been camped at her bedside for the past 10 days as hospice provides comfort care until my ex-wife dies. No words of sympathy need be offered to me, she and I fell out of love a long time ago. Still, this is the person responsible for 11 beautiful family members that would not be in my life without her. She has my respect and compassion.
Everything changed for this robust 72 year old when a devastating stroke came out of nowhere. Brain surgery at 1am left her with a shaved head and a Frankenstein looking scar, complete with staples holding her together. Now she is in the bed at hospice, struggling for breath, mouth agape, snoring from the effects of sleep apnea.
Looking good was her 2nd highest priority topped only by her love for our children. She would be devastated if she knew people were seeing her like this. I appreciate what hospice is doing for her. But where is the dignity?
Once the decision was made for palliative care, wouldn’t the option of a more immediate end to the suffering be appropriate. If/when I’m in her shoes, my answer will be yes. I’d like for this option to be a part of my health care directive.
My daughters are devout Catholics and would not agree with my thinking. But I don’t see a lot of difference between abandoning medical treatment to allow death and taking a pill to let it happen sooner.
I would like to see laws to allow for this. What are your feelings on the subject?
I know my plans, if I am physically able – and that’s to head to Dignatas in Switzerland – one of the few places in this misguided world that allows a human being to pass as kindly and humanely as a pet dog or cat.
The few states here that allow death with dignity have rigid rules requiring multiple in-person visits ahead of time and nearing death: this is often impossible for many sick people who are not residents of that state and not able to repeatedly travel.
I support anyone who is against assisted dying for their own life. But detest the sanctimonious thinking of most US states and other countries who want to control and dictate how much suffering I must experience at the end of my life, based upon religions I don’t agree with.
Edit date 9/4
I have read with absolute respect all of the comments below. This subject is an incredibly personal issue. The replies regarding the effect that death has on the surviving family is an aspect that my question didn’t request. For example, I found the contrasting stories/opinions from Rick, Don, and Mike to be both thoughtful and enlightening. The end result of a death should be and can be the same no matter how one chooses to go. Growth and love for the family, and a celebration of the life of the lost loved one.
Thanks to all.
I am reading these comments while visiting a family member who has ALS and is in the hospital. His life is worth a lot. His will to live is strong. He is not giving up. God has a purpose for his life, even in the weakened state he is in. Yes, his long term prognosis is not good, but in the meantime we are all seeing so much Love in how his situation is playing out. God is still using him to bring Love and remind us all what is really important. It is an eternal kind of Work that is going on. I see this also in our Jonathan here and how I am still learning from him, even now. Chris
If that is his choice, fine. The problem is that others are denied the right to choose differently.
This topic is one near and dear to many of us.
The PROBLEM, as I see it, religious considerations aside, (I am a 73 year old, non-practicing Roman Catholic,) is the old, proverbial “slippery slope.”
WHO gets to decide whether YOU get to decide to “die with dignity?” And by what means? Are you actually of “sound mind?”
The answer invariably involves “the government.” Which government? Which bureaucrats? By what and/or whose “regulations?”
My wife and I have living wills, medical directives, and medical powers of attorney. We live in NC and NC has been kicking the can down the road on this issue since 2015. It was rolled over to the 2024 Legislative Year in 2023.
It is truly sad that American Citizens don’t have the right to die with dignity but since that right doesn’t serve the needs of politicians by getting them elected, reelected, or by putting money in their pockets, it remains a low priority issue.
GOD Bless those of you dealing with this terrible situation in your lives currently.
The answer to the “choice” question, is “doctors”. In the case of US states with some form of Medical Aid in Dying (MAID) law, at least two doctors, three if you include the one making the initial terminal diagnosis. It is extremely difficult to actually die under MAID laws: this slippery slope argument is a red herring.
Thank you for posing this question, Dan, and my condolences to your family for what they are going through.
When my mother was first attacked by MS at age 40, she made it clear to my father and the rest of us that she never wanted to live in a helpless situation. She foresaw — and dreaded — a scenario where she might live out her final years or even decades in a bed with steel rails, unable to speak or feed herself or enjoy life in any form, with tubes keeping her body functioning.
23 years later, now married to a different and more supportive man, she found herself staring down the barrel of that exact situation. She could no longer walk, and speech and swallowing were becoming more difficult, but she was “cursed” with a robust cardiovascular system that could have kept her alive and miserable for another 30 years. Yet her situation may not have been considered by California law to be terminal.
She didn’t bother attempting the process of assisted suicide. She simply informed us that she would no longer eat and would end her life that way. The MS had destroyed the appetite control function of her brain, so she didn’t feel hunger pains.
It worked perfectly, if such a process can be so described. The Catholic nurses at her facility would sneak into her room at 2am to evade her family and try to convince her to eat, and sometimes she’d take a bite to make them happy or just because something looked tasty, but she stuck to her declared path and died peacefully, without pain, three months later. She felt fear only in her final 24 hours or so.
My mom was my inspiration 20 years later when I told my doctors that I had no intention of dying in a bed with steel rails, hooked up to tubes and lines, from the cancer that appeared certain to end my life. I made sure they were all on board with assisted suicide, and I kept the required forms handy and up to date. It was a tremendous comfort to know that I could take a drink and depart with dignity rather than as a drugged-up skeletal remnant of myself.
I never had to come close to making that choice, because the miracle of then-new immunotherapy reversed the verdict of mortality and I’m now into my eighth year of full remission. But knowing I could choose my own exit ramp at any time was a feeling of security that has stayed with me, and I will never live again in a state that does not allow assisted suicide, because whatever the future holds, I intend to keep that option in hand if I can.
But, sadly, the US laws that do exist would not have helped your mother.
An excellent movie addressing this topic was released in 1981 starring Richard Dreyfuss entitled Whose Life is it Anyway?
MAID – Medical Aid In Dying. It’s the law in 12 states now (Delaware is the latest state to enact it.) Restrictions are looser in the West than the East.
Thank you for this post Dan. My heart goes out to you & your family. I took care of my dad the last year of his life as he slowly declined due to stage 4 prostate cancer. He was in hospice care 11 months and eventually decided to end his life with dignity when he started to lose his ability to control his bodily functions. His PSA was over 1800. Fortunately, he lived in California and was able to choose to end his life. I’m a minister and have been with many people in their last hours. My dad’s death was a joyful celebration of his life. He got his drugs on his favorite day, Friday the 13th, three days after his 89th birthday. His family, friends and some of his caregivers gathered on Sunday to watch his beloved 49ers one last time. We told stories, laughed, cried and and said our goodbyes. My wife, his best friend and I gave him a champagne toast as he drank the mocktail” that would end his life. He went on his own terms, with peace and dignity. On Sept. 15 we will “celebrate” the 5th anniversary of his death as we watch the video of his last few minutes of life and toast him with champagne. EVERYONE deserves the right to die with peace and dignity on their terms. I shared our story with Compassion & Choices – https://compassionandchoices.org/stories/don-southworth/ who are fighting for new laws. Peace and blessings.
Don, that is a beautiful story about the peaceful and beautiful death of your dad. Thank you for this post and for the link to your original telling.
This reinforces my belief that we should all have the right to decide how and when we die. I’d surely like to leave this world as your dad did.
Don, thanks so much for your comment and the link. I encourage everyone to read about your family’s experience. I also think that your vocation and experience with helping so many families deal with the passing of loved ones add credibility to your thoughts.
That is a beautiful way to go! If only we could all do it that way!
My sympathies to your daughters and all other family members impacted by your ex-wife’s suffering. I think we’re all agreed that there needs to be a better way.
These are very, very difficult decisions. Perhaps one way to approach the decision would be to ask what courses of action might lead to regret later?
I agree. Being able to die with dignity on one’s own terms should be a fundamental legal right.
I’m sorry to read about this, and I entirely agree with you. In fact I wrote an article about end of life issues for HumbleDollar last year.
I just finished reading “The Day I Die” about the operation of right to die laws in the Pacific Northwest. Too many people fall outside the strict limits of the law, and too many people who are eligible can’t surmount the road blocks to implementation.
Every time I read an article about this issue the comments section is filled with anguished reports from people who watched a loved one die badly.
I’m sorry you’re all going through this. I agree.
Dan, I’m sorry you are faced with this difficult situation. I wish you and your family peace and consolation.
Watching someone you love in their last days is very difficult. My wife and I have been directly involved in hospice care for our parents. Three of them died in our home under hospice, but really under my wife’s tremendous care. The loss of dignity is very real. None of us wants to suffer, or watch a loved one suffer. There are medications to limit this and I think it is appropriate to use them. Luckily our parents had expressed their wishes about extraordinary care, and we were able to honor their wishes,
In our case, each of these events was an opportunity for the family and friends to come together in love and support. I think this is a reflection of how we were raised. Our children, and their cousins, got to be involved at some level in each of their grandparents passing. I think it helped them become better people, and prepared them for growing up and rising their families.
I’m am for a person’s ability to decide when they have suffered enough and want to end their life. A family member of my daughter in law who was a very intelligent and thoughtful person was living in Vermont with a terminal degenerative neurological disease. Towards the end of last year she decided it was time and was able to leave this world on her terms at home with dignity in the presence of her loved ones.
Compare that to my twin brother’s end of life experience. He spent the last several years in a nursing home with both Alzheimer’s and Lewis Body Dementia (diagnosed during a necropsy as he donated his brain for study). During the majority of that time he did not recognize any family members, nor do I think he even knew he existed.
Several years before he died his beloved dog got to the point that she could not walk, and was incontinent.
We brought Sugar Magnolia to the veterinarian’s office and she was euthanized.
I believe my brother’s dog was allowed to die with more dignity than he was.
You no longer need to be a resident of Vermont to qualify under their right to die law. However, that still wouldn’t have helped your brother as you still need a terminal diagnosis, proof of mental competence and the ability to self administer the medication.
I didn’t know this until recently, but it also requires the ability to make several in-person visits, including near the end of life. That puts unfair onus on a sick person who may not be able to physically travel back and forth. They will not do anything by video, phone, etc.
I agree.
I agree with you. Unfortunately, not only did the governor in my state recently veto physician assisted suicide legislation in my state, but only a few years ago a state law was passed to further restrict the use of strong painkillers during hospice as part of the war on drugs. This is one of the items on our checklist for where we plan to ultimately settle when we pick a CCRC as we don’t want to settle in a state (or CCRC) that limits our choices, which unfortunately so many still do.
What backwards state is this that won’t allow sufficient painkillers for hospice patients??? That’s a state I wouldn’t even visit.
I disagree with taking away a persons freedom to use or buy strong painkillers during hospice. If you see this post, please consider letting us know what state that is.
if a strong painkiller is used during hospice and the person who is dying declines to take other medication as the person in hospice knows and has accepted, he is not going to get better, wouldn’t taking only morphine to stop his pain achieve the result of euthanasia naturally but without the objections of having government involved by making assisted suicide, legal?
Wouldn’t the choice to take only painkillers in hospice allow person to die with dignity naturally? Maybe not. I’m asking if anyone has experience to share.